APS Syndrome And A 2nd Opinion RE IVF

3 Replies
5andstilltrying - June 1

Hello, Wondering if anybody has experienced losses once on a blood thinner to treat your clotting disorder? I had 3 miscarriages prior to finding out I have mthfr and lupus anticoagulant. The first 3 pregnancy's all ended at 8.5 weeks, then we both had ALL tests done by one of the top specialists in Washington State. Everything with both of us was great, other than my blood clotting issue. Now I take a baby asprin and heparin from ovulation forward then through pregnancy. My 4th time pregnant (which was my first time on a blood thinner) ended very differently than the others. I always have a missed ab--where they have a good strong heartbeat, everything looks normal, then I go back in 1-2 weeks and it has stopped-but no sypmtoms of miscarriage. My 4th one though was like any womans random miscarriage. It never developed properly and we barely established a heartbeat. That time I did expell the baby on my own around 9 weeks, it had stopped developing at maybe 7 weeks. So I didn't feel like that was a fair shot at trying with the blood thinner. I became pregnant again as soon as we could start trying. Again I was on heparin and the baby asprin, everything looked GREAT. The pregnancy felt so different than the others, I had more intense symptoms. We went in weekly, each appt we had interal growth, the heartbeat was established at 5 weeks 6 days. When I went in at 9 wks 2 days the heart had just stopped probably early that morning. Very frustrated we had a D & C again. Chromosonally it was a normal baby girl, we checked my dna to make sure it was not me and it wasn't maternal. So now my Dr thinks I should look into IVF??? Why--he says because may eggs may be changing and that to be more agressive we should do IVF with the pre-genetic diagnosis. I had the chlomid challenge test done and the fsh test done in May 07--both were normal. There is a VERY new blood test out to check your ovarian reserve and I had that done and I did come in pretty low. The other test is being able to see your ovaries without a cyst. He has looked twice and there has been a cyst so he had some concerns about my reserve but at that time a year ago he really felt my problem was the clotting factor. We meet with the dr. to have a reconference on June 5th and I really am considering getting a2nd opinion. For one I get pregnannt naturally for FREE, very quickly and 2nd I did test normal on two tests (I am 34.5 now) I took last May. Also my embryo's look to develop normally and all that so I don't quite understand why IVF would be in my best interest? Also one HUGE factor is that for 8 out of 9 weeks of that last pregnancy I was on Baxter Heparin, which if you didn't know if was massively recalled. So in the back of my mind I wonder if that had anything to do with it. They were monitoring my blood and it was coming in normal but they say the heparin had some ineffectiveness problems and adverse reactions with people, some ended in death. I did start to get an allergic reaction on my skin by the injection sites whcih hadn't happened the other times. The RE wasn't too concerned, this was at about 6 weeks so I kept taking the Heparin. I am wondering if maybe the test results could have been incorrect because of the heparins quality? I also wasn't having my blood tested at the right time of day. I think the girls at the front desk along with myself forgot to have me check my blood half way inbetween my shots. Since I take my shots every 12 hours and the one in the am is around 7, having my bloodwork done at 9-10 in the morning probably wasn;t giving the most accurate results. It wasn't until my 7.5 week appt that we saw the other RE I love and she reminded me to make my next blood draw appt in the middle of my shot. So at 8 weeks I did, and they upped my blood thinner dose. So that is also something we need to talk to the dr' about. If anybody has any feedback or support I sure could use it. Sometimes I just think how could somebody go through this much pain? Getting pregnant over and over then loosing it is the worst thing I have ever gone through. I wonder how much more I can take, but I want my own baby so bad..........Thank you..-Stephanie

 

stefkay - June 1

Hi Stephanie, I am so so sorry for all of your losses. I had 6 early losses myself before my current pregnancy (i am now 35 weeks and still nervous). I have MTHFR, but that is all that was found with me. This pregnancy I did the Lovenox for the first time. I really can't tell what could be going on here, but some things to maybe try are definitely switching to Lovenox. Heparin has so many more risks and I was told Lovenox works better overall anyways. I've had no issues so far and I started it at 8 weeks. It is one shot per day regardless of dose. The aspirin is good too. I don't know about the IVF...at this stage in the game I don't think I could handle more losses, but that route is so expensive. All of us also run the risk of those "normal" miscarriages even if we are on all of the meds to prevent it....that is what is so scary about all of this. Were you put on progesterone at all? I ask because the specialist I saw worked extensively in recurrent loss and found regardless of progesterone tests that women fared better when put on the prometrium at about 200-300mg per day (I did 300). He also explained that it works as a natural immunosuppressant that can help if your body is attacking the fetus. I was scared that could have been my problem because my path reports from d&c's showed inflammation and signs of infection or immune response (can't explain it as well as the dr. could). Anyways, had I had another loss the dr. said he would consider the next step being prednisone which can help fight any immune response the body might have. I don't even know what kind of testing can be reliably done to see if this is happening in you either. Thankfully I had a very liberal fertility doctor working with me who was willing to let me try most anything as long as the benefits outweighed the risks. I don't know what helped me this time honestly. I also did acupuncture for 3 months prior to conceiving which I feel was good for me overall and I saw a homeopath on the advice of a friend--I'm not really into that stuff, but losses will make you do crazy things :) and that dr. put me on iodine supplements because my levels were so low. He mentioned that my body was out of whack so to say and that can affect hormones, etc. I guess it is linked to the thyroid (even though my TSH, etc. came back normal). Hope I haven't confused you more, just some things to look into. Good luck and I hope you get your baby soon :)

 

stefkay - June 1

Oh, p.s....I forgot to mention that I had most all of the testing done as well. My FSH was normal (4.8), etc. My losses were all very early. 3 were chemical pregnancies and the other 3 were at around 5.5 weeks, 6.5 weeks and 6 weeks. I had to have d&c's for two of them and one happened on it's own although it wasn't until I was past 11 weeks by lmp ( I swore I'd NEVER do that again)

 

5andstilltrying - June 1

Hi Stefkay, Thanks for your response. I think you have answered me before on this forum. What is a chemical pregnancy? I have not heard of that before-just curious. I wonder all the time about the Heparin vs Lovenox! I have had some friends and other women who I have come across and all of them have taken the Lovenox-not Heparin. When I asked the specialist about this right after the miscarriage end of March, he said that the literature to back Lovenox is limitted and that Heparin has a better success rate. I am really starting to wonder that though. Seems like everything I read about leans towards Lovenox not Heparin. As far as progesterone goes my regular ob tried that the 2nd and third time 200mg twice a day, it didn't help and my progesterone is always very normal........accept with preg #4, it was much lower, but that one never developed much so it was not meant to be. The specialist did put me on the progesterone supp (prometrium) for preg#4. This last one everything was in the VERY normal range so I did not take the prometrium. I don't know it is all so confusing. I was just talking to my husband about all this and after we meet with the Dr this Thursday we will have a better feel for what he thinks is best I guess. But I feel strongly that I need a 2nd opinion and to bring up the fact that just because my blood ptt's were within the normal range that doesn't mean I was on the right dose. Like I said before I wasn't getting tested in the middle of my shots and once they did they upped my dose up quite a bit. I think it was too late. I truly do believe in my heart that there has just gotta be some way for us to have a baby, it just keeps getting harder each time, as you know. I have thought about acupuncture??? I have read mostly that it is to enhance fertility--people who are having trouble getting pregnant. But I wonder if it would help with my disorder(Lupus anticoagulant). $$$ is becoming a bit of a factor. We don't have the greatest insurance and the thought of more money for another type of Dr is stressful, but I guess could be worth it in the long run. Thanks! Congratulations to you!!! Soon you will finally be a mom :)

 

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